Our baby has been diagnosed with HLHS (hypoplastic left heart syndrome). We believe that God is in control and will use our situation to glorify his name. As we take this journey, we invite you to join us on our knees and pray for a mended heart.

Friday, 27 April 2012

The Craziest Roller Coaster Ride!

Today started well, I managed to convince (with the help of some NICU staff) a lactation consultant and nurse practitioner to see me this morning, even though her schedule was full. We went over to the clinic and she was wonderful, but sadly believes I have a form of MRSA that goes along with mastitis if you're in a hospital environment for too long. I really don't care what I have, as long as it goes away! I'm on another new antibiotic, orally and topically and a bunch of other stuff. I am hopeful that this will FINALLY do the trick and I'll be breast healthy again!! I still have headaches everyday, likely a side effect of all the antibiotics I've been shoving into my body. Please pray for healthy breasts and no headaches, probably not something you pray for on a regular basis.

After my appointment we sat down for lunch and I got a call from the NICU, it was almost noon and they informed me that they had decided to transport Hope to Calgary, in two hours. I panicked and felt extremely stressed, but mostly confused as they had never mentioned this possibility to us. Shawn had to leave work and get over to the hospital with me, while my mom and cousin Laurel watched Sadie and packed up our lives in Edmonton. At 1:30 we were told that our transport to Calgary had been cancelled and we were no longer going. I almost laughed, but then I realized it wasn't funny anymore...it was going to be like our surgery date all over again!

Supposedly, during rounds our surgeon said that Hope could go back to Calgary because although she still had a lot of different medications, was barely receiving food and had other challenges, she was surgically stable. The neonatologist jumped on that news and organized everything for Hope to leave for Calgary right away. When the surgeon was called to sign off on the final paperwork, he said he wasn't comfortable with her leaving today and wanted another day or two. He apologized for his demented moment and no one questioned him, because he's the surgeon.

At 2:30 the neonatologist came over to Shawn and I and told us that we are now scheduled to go back to Calgary tomorrow. We looked at her like she was crazy and she explained that the surgeon has approved Hope's departure for tomorrow. I have no idea what 24 hours does, but I couldn't be bothered to question. Tomorrow morning, the NICU here will call Calgary to see if there is a bed available for Hope. If there is, they will ask if the transport team is available to come and pick her up, if they are...off she goes. If they are not, Edmonton is going to request their own team take Hope back to Calgary, that will be up to someone in Edmonton to approve or reject. So, we will let you know when we know!

Hope will be transferred back to the Calgary NICU directly and is no more stable than she was yesterday. Today they noticed that her central line was a little red and pussy. They have cleaned it and re-covered it, but there is a risk of infection at that site now. We are strongly praying against an infection that could delay our return home when we're so close! It could still be a long road before Hope gets to sleep in our house, but we would be thrilled to get back to our own city with her at least. It would make it much easier for Shawn with his job, and for all of us with our support system.

We have talked to the Ronald McDonald House staff as we want to be sure we receive all of our HOPE cards for the scrapbook. We'll be leaving addressed envelopes with them to forward our mail on to Calgary for us. If you have yet to mail your Hope card, we'll be sure to get an address in Calgary for them to go to in the next day or so. The craziness of today has exhausted us all and we're ready for a good sleep tonight, please lift us up tomorrow as we come to mind, we fear it could be another roller coaster of emotions!